NINJABETIC – Seeing beyond diabetic retinopathy

“According to Time Hop, five years ago today was a very important moment in my life.

Although at that time I couldn’t see past the fear and uncertainty I was facing. I had come to a dead end and I couldn’t see my future ahead of me.

This time five years ago I was sitting in a hospital gown, alone in a make-shift pre-procedure room, where I awaited over an hour having laser treatment to my eyes.

Only a few days before this I had experienced my first of many bleeds due to end stage diabetic retinopathy.

At that point I wasn’t aware that I had reached this stage, I was oblivious to the silent damage that was slowly affecting the precious and vulnerable blood vessels within my eyes.

‘Clinging onto hope’

I was fast-tracked from my optician to the emergency eye department where I was poked, prodded, tested and questioned over and over.

“How did it get this far?” I thought to myself. “Why hadn’t I stopped before the damage had set in?”

The immense guilt was weighing me down as I was now faced with finally telling my family, friends, employers and colleagues the truth about the long-term damage that I had caused to body.

There would be no more hiding from my diabetes at this point. I was forced to face up to the hurt that I had caused to myself and the people that I cared about the most.

As I sat in the waiting room I was clinging onto some hope that the consultant who I had seen a few days before hand would be able to save my vision.

I was only 25 years old at the time and I couldn’t cope if he didn’t. That’s what doctor’s do isn’t it? They heal us. That was what I needed most in the world at the time.

It was at that stage that my consultant pulled the curtain around, creating a makeshift barrier between us and the outside world, perhaps as an attempt to shield me for a few more minutes from the reality that waited on the other side. Then he spoke those words that I will never forget; “you will be blind within a year”.

‘You will be blind within a year’

Those words hit me like a slap in the face. As I walked along the hospital corridor I couldn’t think, I couldn’t take it in, I couldn’t even cry from the shock of hearing those words.

I had never felt so scared and alone before and a numbing sensation washed over me far faster than the aesthetic as I lay down for my procedure.

I don’t remember what went through my mind at that stage but somewhere deep down I promised myself that I wouldn’t let it happen.

My stubborn nature would work in my favour and I wouldn’t allow this diagnosis to become my reality. I wouldn’t accept it, I would fight it.

After that day I vowed to make the changes that I should have made years before.

I had time on my side, lots of empty time to heal, reflect and gather my thoughts in order to face the world of diabetes management that I had always tried hard to ignore in the past.

It felt very much like this moment was me being diagnosed all over again, but that was what I needed; I needed to finally accept my diabetes diagnosis.

I have always felt that I didn’t receive the diagnosis that I needed. I was diagnosed aged 16 in Disney Land Paris and airlifted to intensive care where I couldn’t speak the language or understand what was happening to me.

There was always a part of me that thought my diabetes wasn’t real. Acceptance was something that I had struggled with immensely and sadly this continued for years, affecting my diabetes management on a daily basis, until this complication finally took hold.

I needed to finally accept my diabetes diagnosis

However, as mentioned, I refused to allow my sight to deteriorate further after this new diagnosis and I made every effort to ensure that I would see my future.

I knuckled down and allowed myself to be diagnosed with diabetes all over again (although this was nine years later).

I built on my knowledge of the condition, the aspects of self-management that would enable me to become healthy again, and I embraced my curious side, testing my limits and the limits of those people helping me, and filling the holes in my knowledge at every opportunity that presented. I found my voice, I pushed for the treatment that I needed in order to halt my retinopathy and this soon paid off.

Within only a few months of intense treatment and procedures I was able to return to work, return to my friends and carry on with life as I always had.

There was only one difference, I had accepted that I had diabetes and I embraced the new lifestyle that I had created for myself.

Five years on and my retinopathy is still dormant. I can still drive, I have pretty good vision and I only need to wear glasses while driving at night. I still see the consultant who changed my world with those words and I know that every time our paths cross he’s pleased that I managed to turn things around for myself, even if it does mean that I proved a very experienced consultant wrong.

Fighting end stage retinopathy is hard work, I won’t lie, and at times I’ve felt that it won’t pay off and I will lose my sight as predicted, however, so far I have only ever had success in my battle.

I hold onto the hope that I can continue on this path and have positive outcomes as a result.

I have many regrets from the way that I previously managed my diabetes and, of course, prevention of complications is the very best option there is, however, it is possible to make a better future for yourself.

It’s difficult to not feel bitter about the past, to not feel guilt and sadness, but the past is behind me now and I have a bright future ahead.